New Flare, after 40 yrs I'm out of remission.

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After 40 yrs with a illeostomy, no colon, I've been in remission. Now in a flare. Recently placed on humira to avoid it getting as bad as it was 40 yrs ago.

I'm having much pain that radiates all the way from rib cage to around my back.

Does anyone experience this and if so how do I get relief.

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  • Posted

    Hi Sandra, Sorry to hear what you are going through unfortunately this is the nature of the animal that is called crohns.  I was diagnosed with crohns 53 yrs ago during which I have undergone several operations and procedures including two bowel resections. Around seventeen years ago my GP referred me to the IBD clinic at our local hospital since I was suffering from bad bouts of diarrhea especially after eating a meals. there the  consultant prescribed B12  injections every three months, which I still have administered today. He also prescribed cholestyramine for malabsorption.  Around 5 to 6 months later I started developing this discomfort in my lower back just beneath the ribcage. As this continued I referred to the leaflet that came with the cholestyramine to see if it was listed as one of the side effects, if it was then it was not listed.  I later had x-rays and ultra sound scans but nothing conclusive came out of these procedures. Since I was not getting any satisfaction from the medical profession I decided to carry out some of my own research on-line. Although I do not normally condone this I was getting  desperate. Eventually I came across this web site which included a section on" side effects" of cholestyramine. And sure enough there was a paragraph related to back discomfort under the heading "Musculoskeletal" but it stated that only 1% to 10% cases was reported which is why it wasn't included in the medication leaflet.  While reading this section I came across something a little more alarming.

    ?It stated that during trials on this medication which was carried out on lab rats the rats developed tumors. Which is ironic since around four years ago I had to have my left kidney removed due to a  tumor being found on it, now whether this is related I am not sure. I later referred my findings to the appropriate authorities.  Over the last few months this discomfort in my back has got worse and is now radiating up my back and spine. You state that yours was is in the form of a pain where mine is more like a very uncomfortable ache that makes me feel really unwell. I hope that this information helps. I also hope that you will soon be feeling better. Happy new year to you and I hope it will be a better one for you with regards to your health.

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    • Posted

      Thank you decndor for your reply to my post. You stated that the medication cholestramine was the culprit for your back issues, good to know, I won't be taking that. After doing some research on Humira I think this might be the cause for all my back pain. I'm going to discuss this with GI Dr Monday. After reading several reviews on this medication I think this is way bad then the way it was described to me.

      I am beside myself because I really don't want steroids added to my regime. I already take Pentasa been on that since 1997 but apparently it's not working anymore. I hate meds but I hate being sick even more.

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    • Posted

      The thing is it is no good taking medication when the side effects are worse the problem it is suppose to be treating. I have no proof that it is the cholestyramine that is causing my back problems but it surely not just coincidence that this started just six months after I began taking this medication and continues today. I have just started taking the only alternative medication to cholestyramine that being cholestragel which comes in tablet form rather than the sachets of powder The only thing is I am now having to experiment on the best times to take them before having a meal since these need time to dissolve in the gut unlike the powder that you take right before a meal.  
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    • Posted

      Yes sometimes I think side effects are worse. I'm going to use wisdom when it comes to this Medication Humira, like a said the reviews were more convenient than pro. I will continue to trust in the Lord that He will heal me His time His way, not that I will disregard Drs advice after all He the Lord gave the Drs the gift of healing but sometimes it's just the wrong Dr.

      I will pray about that.

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